From the Archives: Spring 2005 Issue of Lupus Now Magazine
Forget You Not
Dealing with memory loss means, first, being organized
By Jaclyn Law
Debbie Helm first realized something was wrong in 1989 when, at the credit union where she works, she would forget members’ account numbers in the three steps it took to reach her computer. “I used to be able to work circles around people and never have to write a list,” says the 51-year-old from Terrell, TX. “Now I live with a list because I might not remember your name if you just told it to me.”
At first, Helm thought that her forgetfulness was a normal part of aging. “I jokingly said I had old-timer’s disease,” she says. But, it wasn’t until she was diagnosed with lupus in 1997 that she learned her memory loss was a more serious matter and a symptom of the disease.
Since then, Helm has continued to have problems, forgetting to show up for appointments and even losing her sense of direction while driving. “It can be really scary when you’ve taken a route so many times and all of a sudden, you don’t know where you are.”
Helm is not alone. “Eighty percent of lupus patients have memory problems within 10 years of diagnosis,” says Michelle Petri, M.D., of the Department of Rheumatology at Johns Hopkins Hospital in Baltimore. Petri is the lead investigator on the National Institutes of Health-funded Brain CONECTIONS study, which has shown that many people with lupus have memory problems at diagnosis.
“Mostly they range from mild to moderate memory loss, but a few patients have severe memory loss equal to Alzheimer’s disease,” she says.
Unlike other lupus symptoms—such as joint pain—that come and go, Petri says that memory loss is usually continuous. “It happens to both sexes, in different age groups, and there is no correlation with lupus flares.”
Memory loss can be devastating. “It is a concern when it interferes with a person’s ability to function in their daily life, and it can range from minor inconveniences to safety issues,” says Kathy Kilpatrick, a consultant in Hudson, OH, who has helped adults with memory problems for more than 30 years.
There’s also the emotional impact of memory loss. “It makes me doubt myself,” says Helm. “It affects your self-esteem when you have always been sharp about remembering things.”
Experts aren’t sure why people with lupus have memory problems without experiencing the usual culprits, such as a stroke, but a recent article in Immunity suggests that certain immune antibodies may be the key. The article’s authors, who include Bruce T. Volpe, M.D., professor of neurology and neuroscience at Weill Cornell Medical College in New York, are testing a drug that may block the antibodies from killing brain cells. For now, the drug is being tested only on mice, but the therapy may one day help lupus patients. Experts also hope that Petri’s CONECTIONS study will give clues on how to best treat memory loss.
As for Helm, she’s found ways to cope. She uses calendars at work and home and keeps many lists. She says that a sense of humor also helps: “I think you have to laugh at yourself and about life in general or you will go crazy!”
Remember These Techniques to Improve Your Memory
“If you have moments of forgetfulness, you are not alone,” says Kathy Kilpatrick, a consultant who has helped adults cope with memory loss for more than 30 years. She offers these tips to stay organized:
•Get a physical exam to make sure your memory loss isn’t due to another medical problem.
•Pay attention when you’re receiving new information. Repeat it or write it down. Verify any details you aren’t sure about.
•Don’t clutter your life with things that aren’t important.
•Focus on one task at a time.
•Take good care of yourself: exercise, eat well, and get adequate sleep.
•Learn memory techniques, such as associating a person’s name with an image or repeating the name several times in conversation.
For more memory tips, visit Kilpatrick’s Web site at www.connectionsincommunication.com and click on “Memory.”